Went Gluten Free and TPO Antibodies went from 130 to 17 in 3 months - now overmediated? Feel horrible!

[Lrn5]

Still trying to figure out why I feel so bad on and off - debilitating fatigue, head pressure, high pulse & blood pressure, body aches, cannot exercise!!

Anyone out there go gluten free and have to reduce their meds due to antibodies dropping so much? I have classic symptoms of overmedication now "Thyrotoxicosis" which has come on in the months following gluten free. Nutrients and everything else optimal. I was severely non-celiac gluten sensitive so went gluten free. I read that if TSH drops below range and T3/T4 or normal range that can indicate too much med.

TSH 0.014 (range of .45-4.5

)

T4 Free 1.25 ( range of .8-1.8)

Thyroxine T4 5.7 (range 4.5-12)

T3 Total 114 (range of 76-181)

Reverse T3 19 (range 8-25)

[MaisieGray]

FT3 & FT4 being comfortably within range do not signify over-medication irrespective of your TSH. You haven't provided your FT3 result, but both your FT4 and Total T3 are below half of the reference range, signifying that you are likely under-medicated rather than over. It's unsurprising you are symptomatic and feel unwell.

[radd]

Lrn5,

Welcome to our forum.

How wonderful to have managed the reduction in thyroid antibodies, as this can only be a good thing. Your body has experienced plentiful change and thyroid hormone levels are wobbling.

Your symptoms could also be the result of low thyroid hormone so if you advise what you are medicating, how much and for how long, members will comment further on your blood test results. Have you got FT3 test result ?

[greygoose in reply to radd]

Can I ask you why reducing antibodies can only be a good thing? And, how does anybody know that it's due to the gluten-free and not normal fluctuation, and won't go up again following the next immune system attack?

[radd in reply to greygoose]

GG,

Antibodies are commonly associated with inflammation in the body, when chemicals from the body's white blood cells are released into the blood or affected tissues to protect the body from foreign substances.

Many live well being with elevated thyroid antibodies but those who suffer can suffer badly. TNF is an inflammatory protein (cytokine) involved in systemic inflammation made chiefly of macrophages (type of white blood cell) and its primary role is in the regulation of immune cells but when elevated it reduces blood levels of TSH, T4, T3 and TRH.

As we medicate thyroid hormone, you may say this doesn't matter but replacing those missing thyroid hormones does nothing to address the decreased function in the hypothalamus or pituitary gland also at risk of inflammation.

You may say it doesn't matter if these weren't to function too well either but what about thyroid hormone receptors that inflammation may decrease in both number & sensitivity, eventually discouraging meds to do their job.

And for those who are relying on the conversion of a little T4 to T3, inflammation within the body can reduce conversion rates, meaning a vicious circle for those solely medicating T4 and with inflammation.

How could anybody ever know for certain that a reduction in thyroid antibodies is due to a gluten free diet ? ? . Only an educated guess at recent changes in one's diet may give any possible indication, and whose to say it was not due to normal fluctuations ? .... . Or that those antibodies may well rise again ? ? . .. But for many reducing or aiming to reduce thyroid antibodies, it can be a positive move as cleaner food and living associated with a healthy diet focussed regime has to be progressively positive, whether mentally or actually physically too. .

[greygoose in reply to radd]

OK. As long as you're not suggesting that getting rid of - or reducing - antibodies get's rid of the Hashi's - as most people seem to think.

But, given that antibodies have a job to do, and are only high when that job is there to be done, is it advisable to try and reduce them?

[radd in reply to greygoose]

Ermm, ... who would want possible destructive inflammation or a possible destroyed thyroid gland by choice ... ? ? .

Hashimotos is unfortunately for life.

[greygoose in reply to radd]

It's not the TPO antibodies that destroy the thyroid gland.

I know Hashi's is for life, and that's why all this advice to go gluten-free to reduce antibodies worries me. People think that reducing their antibodies cures Hashi's.

[Hidden in reply to greygoose]

I haven't seen the first test results, but in all the other ones I've never had TPO antibodies, but my TG antibodies were "very high". What destroys the thryoid?

[greygoose in reply to Hidden]

Lymphocytes.

Lymphocytes are a type of white blood cell in the immune system. They enter the thyroid and kill of the cells, and during the process, small amounts of thyroglobulin (Tg) and thyroperoxydase (TPO) leak out into the blood where they shouldn't be. So, the Tg antibodies, and the TPO antibodies, come along to remove these strange bodies from the blood. So, the antibodies that you measure in the blood test don't do the attacking, they do the cleaning up.

Thus, they are an indicator that you have Hashi's, but they are not the cause of the disease, they are the result of it.

[SilverAvocado in reply to greygoose]

Thanks for this explanation, GG! I don't have Hashi's, so have never read up about it. I didn't realise it wasn't the antibodies themselves that nibble the thyroid!

[greygoose in reply to SilverAvocado]

Most people think it's the TPO/Tg antibodies, so that's not surprising. I did myself, in the beginning, because no-one tells you otherwise. But, thinking about it, and reading about it, it becomes otherwise. How else could you have Hashi's without high antibodies if it were the antibodies doing the damage.

[MiniMum97 in reply to greygoose]

Do you know what happens in Graves’ disease?

[greygoose in reply to MiniMum97]

I only have a very vague idea about Grave's, so I wouldn't really like to say anything - except that it's not the same (which you probably guessed! lol) I think with Grave's the antibodies suppress the TSH but force the thyroid gland to over-produce thyroid hormones. Perhaps someone would like to put us right on that, please?

[MiniMum97 in reply to greygoose]

Lol!

I am not sure the antibodies suppress the TSH in Graves. From what I have gathered so far, I think the antibodies attach to the TSH receptors and cause the thyroid to overproduce thyroid hormones. The TSH therefore becomes suppressed as the pituitary realises there is already too much thyroid hormone sloshing around.

However what I don’t understand is why the body produces the antibodies in the first place. As you say, it is my understanding of an autoimmune disease is that the immune system mistakenly attacks a part of the body and the antibodies that are usually tested are an after-effect. In Graves however it seems to be working differently to that in that it’s the antibodies themselves that cause the issue. What I don’t understand is why the antibodies are produced in the first place in Graves as nothing is attached like in hashis? Perhaps I am misunderstanding autoimmunity here and perhaps different autoimmune diseases work differently?? Perhaps the immune system malfunction in Graves’ disease is actually the production of the antibodies and nothing comes before that??

I really want to understand this. Will keep reading and will report back if I work it out!

[greygoose in reply to MiniMum97]

Yes, that's what I thought to begin with. But, I was told no, the antibodies also suppress the TSH.

I think you're right, though, all autoimmune diseases do work differently.

[MiniMum97 in reply to greygoose]

Oh ok interesting.

[Hidden in reply to radd]

Radd,

FT3: 3.7 (2.0 - 4.4)

I had been on 75mcg Synthroid and in June former doc added 20mcg Cytomel. By mid August I was so bad I was hardly able to get around. New doc in late Aug thought symptoms pointed to hyper (rapid pulse, high BP, fatigue and muscle wasting, head pressure) so she reduced Cytomel to 10mcg instead of 20 and in 3 days I felt like a new person. Unbelievable! That lasted 2 weeks and symptoms crept back in. I also had my only nodule disappear after going gluten free. I should note I was off the charts gluten sensitive w off the charts inflammation. Doc thinks as gut heals I am absorbing so much more of my meds that I'm overmedicated. So wants to continue slowly cutting back on meds. I have classic thyrotoxicosis symptoms now. Just wondered if anyone else had to cut meds from better absorption? Started gluten free last year and have had within range antibodies consistently since.

I so appreciate the feedback thank you.

[radd in reply to Hidden]

sroth2407,

Medicating T3 will encourage TSH levels to drop as the pituitary gland senses enough thyroid hormone in the body. It is the T3 & T4 test results that are important, in conjunction with how you are feeling.

FT4 is just under half way through range. FT3 is above but within range.

Feeling overmedicated is horrid but your blood serum levels aren’t high so be mindful not to allow the doctor to cut meds too much. Your doctors suggestion sounds feasible and you may just require more time for your body to acclimatise to the new drive in metabolism. T3 acts quickly but T4 takes a while and you should have retesting carried out in about 6 weeks. I hope you feel better soon.

[Hidden in reply to radd]

Radd - that makes sense. My blood test prior to this one (I am getting one every 6 weeks) showed my TSH was even less and my T3 was out of range high. So those 2 numbers moved slightly in the right direction when I cut T3 by 10mcg 1st of Sept. I wanted to cut all of the T3 (20mcg) since ALL my problems started way back when I first started T3. But doc said no - we can only cut back 10mcg at a time. Then wait 6 weeks for bloods. Not sure why I can't cut it all at once

[SilverAvocado in reply to Hidden]

This doctor sounds quite sensible. The key with this reolacement is to get the very personal right dose for us.

It's easy to give up on T3 or NDT, feeling that it isn't right for us, just because the dose has been very wrong.

You've got to systematically give T3 a proper try, ideally about 6 months, tailoring your dose to find your sweet spot. Its only once you've done that and still feel rubbish on it that you can cross it off the list and know it isn't helping you.

[bookish]

I was recently listening to an interview with Dr Michael Ruscio as part of the Fix For Female Hormones Summit, where he suggested that some (not all) thyroid issues can be resolved by treating the gut. He made some interesting points about the gut-thyroid connection and certainly made me think that I shall try to read a copy of his book. Lots on his website, including

"We know, for example, that the ability of someone to absorb their thyroid hormone medication is dependent upon healthy digestion. And so part of the reason why people may struggle with levothyroxine and then they try a T4/T3 combination and they never feel like they’ve quite gotten there could in part be due to the fact that they’re not consistently absorbing their medication because their digestion is not optimized. So that’s another angle through which the gut-thyroid connection could be leveraged to improve one’s health."

I am now grain free and am noticing improved absorption from food. As with better absorption of nutrients, vitamins and minerals, it makes sense that we might need less medication, just like we may need to adjust in warmer/colder weather. Dr Peatfield's book certainly seems to suggest that medication is a dynamic process.

[Hidden in reply to bookish]

bookish, thanks for the reply! I have read a few medical reports (NCBI and American Thyroid Association) indicating "When the patients with celiac disease or NCGS (non celiac gluten sensitive) went on a gluten-free diet while staying on the same dose of thyroxine, their TSH level decreased, indicating that their absorption of thyroxine had improved.

I am very patiently waiting for my next blood work/doc appt next week to see what we do next! I am so sick of feeling so bad!

[Hidden in reply to Hidden]

Hi sroth2407

Are you able to link to those articles?

Thanks

Sim

[Lrn5 in reply to Hidden]

Hi Sim - sure here's what I found. Testing showed I am extremely non celiac gluten sensitive. Doc explained my absorption was probably worse than a celiac person. I went gluten free and about 6 weeks later is when my (hyper) symptoms started. Reducing meds seems to finally have me going in the right direction but it is a slow process!

American Thyroid Association: thyroid.org/patient-thyroid...

...

SUMMARY OF THE STUDY

This study examined 68 patients with Hashimoto’s thyroiditis alone and 35 patients with Hashimoto’s thyroiditis and celiac disease. The average dose of levothyroxine needed to treat patients with Hashimoto’s thyroiditis alone was lower than the average dose required to treat patients with Hashimoto’s and celiac disease. When the patients with celiac disease went on a gluten-free diet while staying on the same dose of thyroxine, their TSH level decreased, indicating that their absorption of thyroxine had improved.

NBCI: ncbi.nlm.nih.gov/pubmed/223...

...

RESULTS:

Celiac disease was identified in 152 patients, and 22 patients had concomitant hypothyroidism (14.5%). Seven cases met inclusion criteria. Overall, 200 control patients were identified. The mean celiac disease pretreatment levothyroxine dose and weight-based levothyroxine dose needed to maintain a euthyroid state were higher in cases than in controls (154 μg vs 106 μg, P=.007, and 2.6 μg/kg vs 1.3 μg/kg, P <.001). Doses decreased significantly after treatment of celiac disease (154 μg vs 111 μg, P=.03; and 2.64 μg/kg vs 1.89 μg/kg, P=.04). All cases required at least 125 μg of levothyroxine initially to maintain a euthyroid state.

[Hidden in reply to Lrn5]

Interesting. That points to only those who also have celiac disease (ie, damage) needing to give up gluten. However, it looks like they only had seven in the study, so perhaps more study is needed. It points to an absorption issue due to the damage from celiac, I think.

What testing was done for you?

[Hidden in reply to Hidden]

SewinMin - stool testing showed Anti-gliadin IgA at 310 (range 0 - 157) which makes me off the charts NCGS (non celiac gluten sensitive). Also same test showed my Calprotectin (inflammation) more than 3 times the top limit mine was 153 (range 0 - 50). Another marker - Secretory IgA was very low 244 (range 510 - 2010). These things point to 1) extreme NCGS, 2) extreme inflammation and 3) extreme leaky gut. Three top docs in my area (one from the Tahoma clinic in Seattle) agree. And I NEVER had any symptoms. So for me it makes sense that going gluten free has made me absorb more thyroids meds.

[Hidden in reply to Hidden]

Yes, it seems to be about absorption of meds from the damage, I guess it doesn't matter if the cause is celiac or something else, damage is damage. Best of luck, glad you've found a solution.

[SilverAvocado]

Lrn5, in answer to your original question about gluten free and dose reduction, yes its common to need a dose reduction after going gluten free. Anecdotally people turn up on the forum all the time with that story.

I agree with others that your dose doesn't look too high. But everyone is different and symptoms are more important than blood tests. Make sure you don't get railroaded into lower doses and then feeling worse. But that's a question of doctor management, and the politics of the situation, not dosing.

[Hidden]

SilverA - My TSH has been being out of range low since May so am going with the reduction idea. I honestly cannot feel much worse - this has been horrible. It is unbelievable how bad I can feel for a few days and the, something happens, and I am normal for a few days. It feels like my body reaches a saturation point and I launch into the symptoms. This site is so helpful. Hoping one day I will know enough to pay back some of the great info I have gotten!